Good luck to Max/ update on

[Guest guest]

Hello everyone!

Jodi, I just logged on after what seems like weeks, and learned of

Max's surgery. I hope this finds you all well and the procedure behind

you.

had a visit to Dr. H. on Friday AM, the fastest we've ever

had. For those of you who've been there, you'll appreciate what it

means to have a 9:00 appointment and to be finished by a little after

10:00! weighed in at 112 lbs ( a huge weight gain for him of over

3kg---another first) and at exactly 5'7 " . All good news of course. It

was an unexpectedly emotional visit however, because we could see that

' growth curve seems to be leveling off and Dr. H. indicated that

by 15 1/2 boys usually have about 3cm of growth left if they're at their

corresponding bone age. was devastated, and left the appointment

very upset, and ranted, raved and raged all the way home. Apparently he

has had a very different goal for himself (6'). I think it's hard for

as his Dad is 6'3+. Besides having to try to get some of his

expectations in line, seemed to need to express allot of feelings

about what it's been like and is like to have a growth disorder, to feel

different from everyone else, and to have to deal with all of the

medical intervention.

Initially I was very sad and felt upset listening to him. Then I

began to feel really proud of him! (Thank God for long car trips, he

never would have shared so much otherwise!) I was proud of his ability

to share how he feels, to be angry, and even to shake his fist at God

(the ever present " Why me? " ). By the end of the trip he seemed spent,

and it concerned me that he was still feeling negatively. I spoke with

(really briefly-rule 101 with a teenager), about what a joy he has

always been in our lives, and how very happy we are to have him as a

son, and how proud we are of the young man he's becoming. I told him

that I don't of course understand all of his experiences, but I do

respect they've been difficult and will continue to be to some degree,

but that I know he can and will handle whatever he has to. spoke

of being teased about his small pinkie and we talked about how he could

respond. There was quite a bit more, but the upshot is he came home,

was a bit testy with his sister (5'8 " +), then called a friend and had a

great afternoon and evening. He gave me a big hug, (in front of his

friend!) and I took it to be a kind of thank you.

I'm sharing this because I hope it will help everyone with thinking

about when their children share their pain over having RSS. It's OK.

It's painful for us to listen, and to acknowledge their feeling, but I

think that this sharing is what will help them be strong and go on, and

actually feel better about themselves. (Oops, my clinical social worker

self is showing!) I'll keep you posted.

[Guest guest]

,

Congratulations! Not only have you embrased the medical treatment that

enabled your son to achieve average height(!!!), you have also raised a

strong and mature fellow. Your wise to recognize the value of his rantings,

and to even appreciate it. I pray Bay can achieve that height. Your son

may find his height prospects disappointing because of your husbands height,

but without your husbands height may have been far shorter. I'm sure

it's difficult to go through so much to achieve height. RSS is not a fair

thing. To me, your son's disappointment assures me even more that I should

and will do whatever I can to get Bay started early on GH and to as " normal "

a height as possible. I am fortunate not to feel the quandry that others

feel over our limited treatment options. Thank you for filling us in. I

hope you are recognizing your success!

Good luck to Max/ update on

Hello everyone!

Jodi, I just logged on after what seems like weeks, and learned of Max's

surgery. I hope this finds you all well and the procedure behind you.

had a visit to Dr. H. on Friday AM, the fastest we've ever had.

For those of you who've been there, you'll appreciate what it means to have

a 9:00 appointment and to be finished by a little after 10:00!

weighed in at 112 lbs ( a huge weight gain for him of over 3kg---another

first) and at exactly 5'7 " . All good news of course. It was an

unexpectedly emotional visit however, because we could see that '

growth curve seems to be leveling off and Dr. H. indicated that by 15 1/2

boys usually have about 3cm of growth left if they're at their corresponding

bone age. was devastated, and left the appointment very upset, and

ranted, raved and raged all the way home. Apparently he has had a very

different goal for himself (6'). I think it's hard for as his Dad is

6'3+. Besides having to try to get some of his expectations in line,

seemed to need to express allot of feelings about what it's been like and is

like to have a growth disorder, to feel different from everyone else, and to

have to deal with all of the medical intervention.

Initially I was very sad and felt upset listening to him. Then I began

to feel really proud of him! (Thank God for long car trips, he never would

have shared so much otherwise!) I was proud of his ability to share how he

feels, to be angry, and even to shake his fist at God (the ever present

" Why me? " ). By the end of the trip he seemed spent, and it concerned me

that he was still feeling negatively. I spoke with (really

briefly-rule 101 with a teenager), about what a joy he has always been in

our lives, and how very happy we are to have him as a son, and how proud we

are of the young man he's becoming. I told him that I don't of course

understand all of his experiences, but I do respect they've been difficult

and will continue to be to some degree, but that I know he can and will

handle whatever he has to. spoke of being teased about his small

pinkie and we talked about how he could respond. There was quite a bit

more, but the upshot is he came home, was a bit testy with his sister

(5'8 " +), then called a friend and had a great afternoon and evening. He

gave me a big hug, (in front of his friend!) and I took it to be a kind of

thank you.

I'm sharing this because I hope it will help everyone with thinking

about when their children share their pain over having RSS. It's OK. It's

painful for us to listen, and to acknowledge their feeling, but I think that

this sharing is what will help them be strong and go on, and actually feel

better about themselves. (Oops, my clinical social worker self is showing!)

I'll keep you posted.

_____

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_____

[Guest guest]

What can I say? When I read about the emotions and fears that Max and

revealed, my heart broke. Then, I remembered how lost I felt for my

grandson and how I found Jodi and what a relief it was to know that we were

not alone. I think that's what these kids need - to find each other and

know they are not alone. Am I making any sense? Is 's support

group for older kids and adults with RSS still going? Maybe that would help

.

(Grandma to Trey)

>

>Reply-To: RSS-Supportonelist

>To: " RSS-Supportonelist " <RSS-Supportonelist>

>Subject: Good luck to Max/ update on

>Date: Tue, 29 Feb 2000 13:12:47 -0500

>

> Hello everyone!

> Jodi, I just logged on after what seems like weeks, and learned of

>Max's surgery. I hope this finds you all well and the procedure behind

>you.

> had a visit to Dr. H. on Friday AM, the fastest we've ever

>had. For those of you who've been there, you'll appreciate what it

>means to have a 9:00 appointment and to be finished by a little after

>10:00! weighed in at 112 lbs ( a huge weight gain for him of over

>3kg---another first) and at exactly 5'7 " . All good news of course. It

>was an unexpectedly emotional visit however, because we could see that

>' growth curve seems to be leveling off and Dr. H. indicated that

>by 15 1/2 boys usually have about 3cm of growth left if they're at their

>corresponding bone age. was devastated, and left the appointment

>very upset, and ranted, raved and raged all the way home. Apparently he

>has had a very different goal for himself (6'). I think it's hard for

> as his Dad is 6'3+. Besides having to try to get some of his

>expectations in line, seemed to need to express allot of feelings

>about what it's been like and is like to have a growth disorder, to feel

>different from everyone else, and to have to deal with all of the

>medical intervention.

> Initially I was very sad and felt upset listening to him. Then I

>began to feel really proud of him! (Thank God for long car trips, he

>never would have shared so much otherwise!) I was proud of his ability

>to share how he feels, to be angry, and even to shake his fist at God

>(the ever present " Why me? " ). By the end of the trip he seemed spent,

>and it concerned me that he was still feeling negatively. I spoke with

> (really briefly-rule 101 with a teenager), about what a joy he has

>always been in our lives, and how very happy we are to have him as a

>son, and how proud we are of the young man he's becoming. I told him

>that I don't of course understand all of his experiences, but I do

>respect they've been difficult and will continue to be to some degree,

>but that I know he can and will handle whatever he has to. spoke

>of being teased about his small pinkie and we talked about how he could

>respond. There was quite a bit more, but the upshot is he came home,

>was a bit testy with his sister (5'8 " +), then called a friend and had a

>great afternoon and evening. He gave me a big hug, (in front of his

>friend!) and I took it to be a kind of thank you.

> I'm sharing this because I hope it will help everyone with thinking

>about when their children share their pain over having RSS. It's OK.

>It's painful for us to listen, and to acknowledge their feeling, but I

>think that this sharing is what will help them be strong and go on, and

>actually feel better about themselves. (Oops, my clinical social worker

>self is showing!) I'll keep you posted.

______________________________________________________

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[Guest guest]

,

Thank you so much for sharing your story with me!! It seems there are

days when I'm overcome with worry about 's future! Josh is only 13mons

old & I'm already worried about bullies, & people teasinghim. Any time I hear a

nice mother-son story I get all teary. I have two boys now & we're not sure we

want to have any more children just yet,. Anyway when I was pregnant with my

first one of my patients (who was very old & senile,) told me that I should

really hope for a little girl. When I asked her why she replied " A son is a son

until he takes a wife but a daughter is a daughter all of her life. " Now I

can't tell you why that bothers me so, but I just love to hear of close bonds

between mothers & sons!!!!!!

PS I have decided the only sport I will discourage Josh from participating in

is hurdlejumping!

- Mom of (13 mons)

& (3yrs.)